Autism Advocacy Groups: Businesses Specializing in Increasing Awareness of an “Autism Epidemic”

(Originally posted for The Voice of Heard on October 17, 2011)

If you have read my recent entries on the myths of autism, you’re probably wondering “why didn’t you debunk the myth that advocacy groups like Autism Speaks are helping people with autism and their families?” That was my intention a few weeks ago but I decided that trying to do just that would take a lot of space; more space, in fact, than the other myths I’ve gone over. So I decided that I would save that task for this entry. In the course of my research into autism advocacy groups, I just couldn’t help but ask: why do they portray autism as a disease that’s a burden on the families of the affected? What good would it do for those families to give the advocacy groups so much money in order to provide help to their autistic children? Where does all the money really go other than research for causes, treatments, preventions, and cures? These questions have to be taken into consideration as I go over three major autism advocacy groups, which I would refer to as the Big Three (for reasons I will express later on in this post).

1. Generation Rescue

Advertisments sponsored by Generation Rescue, like the one shown here, have been running in newspapers like USA Today.

Founded on May 24, 2005 by a wealthy financier named J.B. Handley along with his with, Lisa, this non-profit organization got its start by promoting chelation therapy and recruiting 100 parents of autistic children, known as “Rescue Angels,” to spread the word about the therapy as a miraculous cure of autism. What prompted them to do so was because they believed to have witnessed this so called miracle when they treated their autistic son, Jamie, with chelation therapy. Between the time since the organization’s foundation and January 2007, Generation Rescue entered the mainstream spotlight with an aggressive media campaign, part of which included sponsoring full page advertisements in major newspapers, mainly the New York Times and USA Today. In 2008, the Handlys produced Autism Yesterday, a documentary film claiming that autism is a reversible biomedical condition. Such media coverage had promoted the myth that autism is a form of mercury poisoning, largely from vaccination. The organization’s belief in the myth and the “miraculous power” of treatments like chelation therapy is evident in their original mission statement:

Generation Rescue is a non-profit organization founded by parents of mercury-poisoned children dedicated to providing other parents with the truth about the cause of their children’s neurological condition. We have united out of the shared bond, anguish, and outrage at discovering that our children have been mercury poisoned. Right now, thousands of parents armed with the truth are successfully healing their children. (Note: I tried to find this quote, which was featured in the book Autism’s False Profits, on the group’s website but I could not find it.  I assume it was taken off.)

While researching Generation Rescue on the website Neurodiversity.com, I noticed that how the “Rescue Angels” deal with autistic individuals was anything but angelic, as evident in an email sent to J.B. Handley to a mother of a child with Asperger’s Syndrome complaining about their behavior and attitude toward autistic individuals like the autistic blogger Autism Diva. It is also apparent that the group functions more like a religious sect than a group promoting scientific advocacy based on an email exchange with J.B. Handley and Kathleen Seidel, the creator of Neurodiversity.com. Today, Jenny McCarthy, a former Playboy model who became an autism advocate, currently acts as president of Generation Rescue.  Besides chelation therapy, Generation Rescue now promotes other biomedical treatments for autism, including diets free of glutin, casein, and soy; vitamin and mineral supplements, homeopathy, and other treatments said to heal the “leaky guts” of autistic children.

2. Autism Research Institute (ARI)

Dr. Bernard Rimland (second to right) stands in front of the Autism Research Institute (ARI) in San Diego,CA, which he founded in 1967 and was the director until his death in 2006.

Dr. Bernard Rimland (1928-2006), originally a research psychologist for the US Navy, established this organization in 1967 in San Diego, California because of his wariness of the slow pace of research on autism. Although he played a role in disproving the refrigerator mother theory of autism promoted by Bruno Bettelheim, he promoted a theory which turned out to be another myth: that autism was fundamentally a biological disorder that resulted from environmental factors and/or defective genes. Later in 1995, the ARI brought together a group of 30 scientists and physicians to exchange information and ideas about alternative solutions for treating autism in a conference which became known as Defeat Autism Now! (DAN). Known as DAN doctors, these practitioners offered alternative therapies to many parents who believe that the major medical establishment is lacking an immediate solution for their children’s autism. The DAN therapies, some of which are only performed by special laboratories working directly with DAN, consist of eliminating substances that could damage the children’s guts, re-inoculating them with healing bacteria, and repairing them with nutrients. Before these therapies could even begin, however, the autistic children in the DAN doctors’ care had to go through many daunting tests, including but not limited to blood tests, urine tests, and stool analyses. Such tests, like the therapies themselves, are widely diverse, highly expensive, and disproved by many members of the scientific and medical communities. They cost thousands and sometimes tens of thousands of dollars and are rarely, if ever, covered by medical insurance, forcing parents to pay for them out of their pockets and bank accounts. Many DAN doctors, 300 of which currently practice in the U.S. as of this writing, have been disciplined by medical boards across the country for their unethical and illegal practice of medicine and several of them had their medical licenses suspended or revoked because of it. Even more disturbing, the ARI only lists the names and locations of the DAN doctors and not the majority of doctors, physicians, and scientists who don’t find the tests and treatments promoted by DAN to be useful in autism research and practical use in the field of medicine. Regardless, the ARI still declares autism as a treatable disorder and the DAN conferences are still being held to this very day.

3. Autism Speaks

This walk held last year in Los Angeles, CA was one of the many walks held by Autism Speaks that raises funds for its programs.

This is the world’s largest and most influential autism advocacy organization, created five years ago by Robert and Suzanne Wright, wealthy grandparents of a child with autism and financially launched by a $25 million dollar donation from Bernie Marcus. Merging with three other autism organizations since its founding, Autism Speaks has acquired large amounts of money from donations and its walks for a cure. According to their 2010 annual report, they have received $50 million dollars from public support (which includes corporations, celebrities, and charities) and spent at least $2 million dollars in advertising. Examples of such donations are many; Toys “R” Us has donated over $1 million dollars; Bank of America contributed over $200,000; Robert and Suzanne Wright, the very people who started Autism Speaks, personally donated over $100,000 to their own organization; and Universal Studios donated at least $25,000. The majority of the funds accumulated by Autism Speaks go into research grants that “[fund] research into the causes, prevention, treatments, and a cure for autism.” The research sponsored by Autism Speaks mainly focus on detecting genetic and environmental factors, diagnosis, and ways of detecting signs of autism in embryos. There have been occasions when Autism Speaks got into conflict with the autism community. One of them took place in September 2009 when a controversial short video title “I Am Autism” was screened at a World Focus on Autism event held annually by Autism Speaks. A year earlier in January, an autistic blogger was forced to shut down his site which was a critical parody of Autism Speaks. Autism Speaks had threatened him with legal action for him to stop using its name and logo on his blog without their permission.

When I analyzed Generation Rescue, the Autism Research Institute, and Autism Speaks, I have found that all three autism advocacy organizations have plenty of things in common, which is the reason why I referred to them as the Big Three earlier. They are all 1) well-funded by the public; 2) represented by influential businessmen, physicians, celebrities; 3) they tend to portray autism as an epidemic that needs to be cured, 4) focus their funding on treatments, causes, and cures; and 5) not include any people with autism to represent them or even include them in their discussions. On the surface, these major autism advocacy groups appear to have good intentions in regards to helping many families affected by autism. When examined closely, however, they are more like businesses specializing in increasing awareness of an autism “epidemic” while making money off of parents’ concerns for the well-being of their children with autism. Many people may not be aware of this, but there are many autistic individuals who are actively speaking out against groups like Autism Speaks for focusing more on searching for a cure for autism than on finding ways to improve the lives of autistic people so they can function independently in society. I will be covering such individuals in a later post. If you wish to validate my information about the Big Three, I recommend reading the book Autism’s False Prophets as a start. I also suggest you take a look at their websites so you can see the point I am trying to get across here and also research them using Neurodiversity.com for additional information.

Original Comments

AutismNewsBeat
October 19th, 2011 at 2:50 pm

“Generation Rescue is a non-profit organization founded by parents of mercury-poisoned children dedicated to providing other parents with the truth about the cause of their children’s neurological condition,” etc.
There is a huge split in the anti-vaccine community over the role of thimerosal in autism. Not whether mercury causes the disorder – that’s a given among these groups – but whether all autism is caused by mercury. Handley has backed off his original position that all autism is mercury poisoning. The myth can be traced to a 2000 article in Medical Hypothesis called “Autism: A Novel Form of Mercury Poisoning.” I wrote about the “study” here:
http://autism-news-beat.com/archives/27
Thanks!

Itzel
March 24th, 2012 at 8:30 am

Actually, chelation is being used to treat more than the rrucmey the thought is that our kids can’t get rid of many of the heavy metals to which they are exposed. This includes lead, molybdenum, arsenic, copper, etc. Most people can stand some exposure to these things and filter them through their bodies, but a lot of these kids can’t.Every child I know except 1 who has done chelation with a knowledgeable and cautious M.D. has seen enormous success. If done properly, and preceeded by dietary changes and getting the body as healthy as possible, it’s amazing what can happen.

Rahul
May 10th, 2012 at 7:19 pm

before and will say again) do I think there is anything about my son that needs “cured!” Does he need help to fuotnicn in life? Yes! Do I need to teach him and educate him? Yes! Do I think he is somehow flawed? No!!